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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Thank you Wolvesgirl

Hope your Zumba went well - it seems so strange that we feel fine, and know that we're going to have a treatment that's going to make us feel unwell!  You wouldn't do that in any other circumstances, would you?!!

 

Everyone does seem very supportive - and I think that will be a big help.  I hope I can support others as well as we go along on our journeys.  This time next year we might not be millionaires, but we'll feel like we are when we're told we're all better.

 

Good luck next week - getting the chemo was fine for me, although I was dreading it to be honest.

xx

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Re: August 2019 Chemo Starters

Thanks Blackcat.  Ah, so we were in the same position on 7 August!  My next one is scheduled for 29 August, so I'll be thinking of you when when I'm sitting in one of the big blue chairs hooked up to the machinery.  I'm having a portocath fitted next week, so something else new to get used to - the nurses tell me it will be good for me as my treatment is likely to go on for quite some time.  They seem quite surprised at how many I'll be having, and there was me thinking I wasn't too bad... but it's the HER2+ side of things that seems to have made such a difference (I'm "triple positive" apparently).

 

I've had the sore throat / swollen mouth too, but that's gone now.  Woke up this morning feeling pretty good (was wonderful!) but a little nauseous later, so back on the drugs for that which have made me tired.  Ah well, no-one said it would be easy and at least we've started the journey now so one step closer to it being over.

 

Hope you're feeling OK today.  xx

 

 

 

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Re: August 2019 Chemo Starters

Thank you Spottycotty.

It's so lovely to hear from others going through similar horrors, but putting up with them so well and with as much humour as we can manage!  I seem to lurch between the nausea and the tiredness, but am starting to work out a pattern so that hopefully I'll be more prepared after my second chemo (29 August).  I think I'll be more strict about what I'm prepared to agree to do in the 9 or so days after the chemo next time...

 

I agree - although not pleasant, fatigue is much better than the sick feelings, and my dog is loving it, as he spots an opportunity to snuggle up and takes it every time.  Not that I'm cold, but he's clearly taken on the role of portable hot water bottle.

Hope you're feeling 'reasonable' today.  xx

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Re: August 2019 Chemo Starters

Good afternoon champions,

 

I am 48 hours on from my first chemotherapy session. I have to say, so far so good.  No sickness just periods of fuzziness and tiredness. Also the steroids I took yesterday did keep me awake until gone 3am. 

 

I also tried the cold cold cap and seemed to be ok after the first 10 mins. It was more about the weight of the cap that I found uncomfortable.  But rest the chair bed back and nearly dropped off (me not the cap) 

 

i have found eating ginger ginger biscuits and tea and also wearing the sea sick wrist bands all the time has helped.  I notice when I take the bands off while I have a was then my then I start to feel nauseous.  Maybe worth giving them a go.

 

The nurses at the hospital were so lovely. Like others on here, I’m glad to get the first session of many out of the way.  Starting my injections today for next five days.  Let’s hope the bone pain won’t be as bad as I have been told after these. Would be good to hear how you are progressing. 

 

Keep strong, positive thoughts and we can beat this xx

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Re: August 2019 Chemo Starters

 

 

Hi ladies

 

first one all done. Feel better now I know what to expect. All the nurses were so lovely and made me feel so comfortable. My mum came with me so we had a little giggle too with the other ladies. So far I’m feeling ok a bit fuzzy headed but apart from that I’m ok. I just hope when the side effects come there kind to me and don’t just hit me like a ton of bricks.

 

Bob I hope yours has gone ok today. 

 

Take care ladies

Lisa xxx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

I hope that you have a lovely weekend in North Wales, and that the weather is kind to you.   Have a good break from thinking about treatments, eat lots of nice food and have some fun! I am going to try to do the same - on Day 10 post-EC tomorrow and feeling pretty much back to normal at the moment.  Head follicles are prickling but no real hair loss as yet, so will see what happens in the next couple of days.  Wig, hats and scarves are at the ready.  I have two beautiful indoor black cats (hence my username) who seem a bit spooked by the wig and run a mile when I put it on, so I am hoping that the reaction of human beings will not be the same!  

 

Blackcat xx

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Re: August 2019 Chemo Starters

Thank you ladies 💕

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Re: August 2019 Chemo Starters

best of luck Lisaloo and Bob123 - another one crossed off!!! get good sleep xxx

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Re: August 2019 Chemo Starters

All the best for tomorrow, Bob - I hope that everything goes really well.  You have one treatment under your belt already and you know what to expect now, which makes a big difference.  We will all be rooting for you too.

 

Blackcat xx

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Re: August 2019 Chemo Starters

 

 

Thank you for all the support Ladies 😘😘

 

And Bob I’ll be thinking of you too on your second round. I’m hoping once I get tomorrow out the way it all won’t seem as daunting! 

 

Hugs to everyone xxx

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Re: August 2019 Chemo Starters

Hi All

Hope you’re all feeling ok today.

I just wondered if anyone has had any success with PICC line covers? I’ve got 2 from annabandana that get baggy and fall down my arm and 2 from piccme that roll down 🤪 any suggestions would be greatly received.

Good luck for tomorrow Lisaloo, I’m sure you’ll smash it. I’m in for my second weekly chemo tomorrow, fingers crossed it goes as smoothly as last week.

Take care everyone

Bob xx

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Re: August 2019 Chemo Starters

Welcome murphsmum,

Sorry that you find yourself here, but it’s  great that you’re preparing and figuring stuff out now ahead of everything starting, I think waiting to start is the worst bit as the anticipation of feeling ill is awful!!

Hopefully you’ll sail through. Have you got any definite dates yet?

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Re: August 2019 Chemo Starters

Lisaloo good luck for tomorrow, we’ll be thinking of you xxxxxxxx

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Re: August 2019 Chemo Starters

Hi Lisaloo,

 

All the very best for tomorrow - you will be fine, and we will all be cheering you on.

 

Blackcat xx

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Re: August 2019 Chemo Starters

 

Hi wolvesgirl 

 

Thank you so much for the well wishes. Last full shift at work done today then I’m just going to go in as and when i feel I can. Iv just been shopping and stocked up on ice lollies, Oranges, a fresh pineapple to chop into chunks, some mouth wash and a soft tooth brush. I’m going to look on line for the nail cream too. Thank you so much for the tips ladies. Very very nervous about tomorrow now. Going to have a nice bath get my pjs on, chill out and eat sweets with my kids.

 

ill keep you all posted on how I get on tomorrow xxx

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Re: August 2019 Chemo Starters

Hi, I will be starting chemo in the next 3 weeks and am going to try and print what you wrote, it sounds like valuable information. Going to stock up on ice lollies, pineapple and cheese I think!

Thanks for the info x

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Re: August 2019 Chemo Starters

Hi Lisaloo

Just a note to say all the best for tomorrow - I will be thinking of you.  I am sure and I hope that you will be absolutely fine.  I am not sure about internet connection whilst I am away so just in case - have a good weekend everyone and talk to you next week.  This time in a week I should be home after my first session and on the way to getting this phase of treatment over with.  Love and peace xxx

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Re: August 2019 Chemo Starters

Hi JulieMe, 

my story is very similar to yours. Lumpectomy and reconstruction but following second biopsy show grade 3 lymph node involvement and a HER+ tumour as well as a large area of DCIS everything changed and I am now on pre surgery chemo and targeted therapy TCHP ( tacatel carboplatin Herceptin and Perjeta) . I had my 3rd cycle this week So half way through primary treatment before op and radiotherapy and more Herceptin for 12 cycles. Long road but worth it.

As to your question about each treatment being similar mine have  have all been different. First cycle I was violently sick when I came off steroids. 2nd  time I changed tack with my prep. I had my last meal the day before by 6 pm and avoided all processed carbs. I also missed my yogurt and fruit as well as cereal the morning of chemo but did have a small homemade cup a soup as I needed food with my steroids. I think this cleared my tummy more quickly. Reading other threads a empty tum helps the waste  chemo to leave your system more quickly which helps with the sickness.

Be aware of Constipation It can be much more difficult to treat than the trots. I try to keep regular with prunes etc but on chem day I take Dulcolax before bed which helped me. If I get bad trots I take a pill but also drink Lucozade sport the one that replaces the lost  electrolytes in your system. It worked so well I was able to go for a bike ride an hour later without being worried.  I do mainly keep everything in check by eating healthily.

Oh and I also try to going walking as much as possible as that also makes me feel less shattered. I come back pleasantly weary and have a better rest. Gets rid of the feeling bad for me anyway. If I can’t get out I do some gentle dancing around but slow to how I was.

Because of a computer crash at my Hospital I couldn’t se my Oncologist before my 2nd round of treatment but I have been given better ant- sickness drugs this time. They seem to working so far but I’ll see once the steroids leave my system later today. 

I think our bodies all react differently to our personalised treatment but chem nurses and this marvellous forum have loads of help. I have many of the possible SE but very low grade as I try to preempt them by taking the prescribed pills and creaming well before the SE gets underway. 

I seem to be doing ok but I am getting slightly more weary each time. 

Hope your experience is not too bad

best wishes BOD x

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Re: August 2019 Chemo Starters

HI Spottycotty, Wolvesgirl and everyone,

 

Yes, I agree about the oranges (they keep the innards moving too, just in case the steroids cause any backup!), and also the ice lollies (mine are those rocket ones, which I think are pineapple flavoured).  I am also really enjoying those little pots of jelly with fruit in, which I keep in the fridge and are lovely and cool to eat if your mouth is a bit sore.  They come in several flavours.  Other things I have started using are non-perfumed soap (Simple), Sanex dry skin shower gel and E45 lotion, as my skin is now getting a bit dry and flaky.  I am also using Evonail (from Amazon) on my nails, which seems to be doing them good.  I am using lots of lip balm too, and have bought a nice one from Burts Bees which seems to be particularly protective.

 

Hope everyone has a good day, despite the dismal weather.

 

Blackcat xx

 

 

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Re: August 2019 Chemo Starters

Welcome JulieME

Sorry you are here as none of us want to be in this position but I think we are supporting each other through this and I am sure you will find it helpful.  Just off to a double hit of Zumba - making sure I get my fix in before next week when I have my first cycle.

xx

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Re: August 2019 Chemo Starters

Hi JulieME,

 

It’s good to meet you, and to hear how you are doing.  I have an HER2+ lump too and had my first chemo (EC) last week on the same day as you (Wednesday 7 Aug).  I felt pretty well for the first few days, apart from developing a sore throat over the weekend, but like you I have felt more nauseous and tired over the past two days.  I guess that this must be a pattern, as we are now in the lowest point of the treatment cycle when we have fewest resources.   I have not actually been sick or had any other digestive issues as yet.. Hopefully we will get past this stage and will feel better in a few days time as our blood counts rise (then it will be on to the next treatment).

 

It is good that you have got your biopsy over, as early morning appointments definitely do not help when we are feeling under the weather.  I hope that you will have a much better day today.

 

Blackcat xx

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Re: August 2019 Chemo Starters

Thanks Spottycotty

Will add oranges to the list!  Rather partial to them at the best of times so hopefully that will continue.  I will also get the lollies in stock.  Glad you are feeling better - enjoy the time with the children now you are feeling better xx

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Re: August 2019 Chemo Starters

Welcome JulieMe,

 

Sorry that you find yourself here as we all are but we are in it together now!

 

Pleased to hear you haven’t suffered too much, I’m at the fatigue stage at the minute, feels like someone turned earths gravity up!

Never mind though, I prefer this to feeling sick and dizzy!

 

Anyway, lovely to ‘meet’ you, hope you can enjoy your day xx

 

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Re: August 2019 Chemo Starters

Just to add to your list Wolvesgirl, I’ve now got a freezer drawer full of orange ice lollies! They scraped me through the first couple of days along with oranges kept in the fridge. Couldn’t manage any other flavour though!

Also crackers were a godsend to nibble on when I was at my worst. 

The hospital gave me the mouthwash to bring home with me.

 

My friends have asked if I need anything, bath soak, iTunes voucher etc, I said no thanks, if you come and visit all I need is a bag of oranges!! They rolled their eyes but it’s so true 🤣

pleased to say, I’m day 8 and back In the land of the living, off to cinema with kids later, feel bad for affecting their summer holidays!

 

Really hope everyone is else is well today xxx

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Re: August 2019 Chemo Starters

Hi Lisaloo, Blackcat and everyone else in our little gang

 

Pouring with rain here this morning and so dark!  Not looking great for our weekend away in North Wales but hey ho!  Anyway, Lisaloo well done for yesterday, I am sure you feel more anxious as it seems more real now you have set foot in the place - once Friday is out of the way as Blackcat says you will be one more day closer to the end of the treatment with me sprinting in six days behind you.  Have you got everything that you need?  I have been jotting down stuff that people recommend - alcohol free mouthwash, avocado oil, pineapple chunks, ginger biscuits etc - and will get them when I next shop.  

 

Have a good day all of you. xx

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Re: August 2019 Chemo Starters

Hi everyone.  I managed to post this in the wrong place yesterday, but Community Champion Jill has helped me find the right place.  Hope this finds you now...

 

Having been diagnosed in July, I was originally going to have a lumpectomy or mastectomy followed by radiotherapy.  But when I went for my appointment with the surgeon they'd had more results in that showed my cancer is HER2 positive - which changed things dramatically (I thought I was going to 'get away' with having chemo).

 

So now I'll be having 18 cycles of SACT, including 6 chemo at 3-weekly intervals (although I'm not sure whether the Ontruzant/Herceptin will be at longer intervals once the chemo is over).  I will also be having Zoledronic acid to help bone strength, but only once I have obtained a report from a dentist. There seems to be so much to do and sort out!

 

I had my first chemo last week (Weds 7th) and was fine for first couple of days, but have felt very nauseous (only been sick once) and nasty 'other end' business for the last 3 days.  Has anyone else been able to identify a pattern of good and bad days?  I had to have another biopsy (lymph nodes) yesterday and it was an early morning appointment, which I think didn't help at all and I felt awful all day.  SO tired too.

 

Just thought I'd introduce myself and wish everyone else on here the very best of luck with their treatment.  I'm scared, but am trying to remember that the drugs are my friends and that they will be fighting for me against the Evil Lump as we have named it.  Best wishes to all  xx

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Re: August 2019 Chemo Starters

Hi Em39

You have hit the nail on the head - thats exactly how I feel and I think the people that do know think I am crazy for feeling this way - I can't help it!  Like you, I know they are well meaning but the idea that random people know really personal stuff about me is something I cannot come to terms with.

 

Great advice re the paracetamol - thank you - I will take that on board.  I really hope I will be like the lady you mention - I guess none of know how it will affect us until we start.  

 

Thanks for the kind words - I am glad I am not the only one!  Very best wishes xxx

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Re: August 2019 Chemo Starters

 

Morning ladies.

 

Went to the chemo ward yesterday afternoon for my pre chat. I really am so nervous and anxious for Friday morning now 😬😳 

wolvesgirl I hope you have a lovely weekend away. I get what you mean about feeling out of control, glad it’s starting but also not! It is indeed a very strange time! I’m feeling so many emotions all at once. 

Hope everyone that’s already started is feeling as ok as they can. 

 

Lisa xxx

 

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Re: August 2019 Chemo Starters

Hi Blackcat

 

I found the Doc/Her/Per side effects weren't as bad has the EC.  I didn't have nausea, headaches or that spaced out feeling like i had with the EC.  I did find that days 1 -3 were ok then 4-8 just feeling achey and tired, bones in hips and bottom of back throbbed (a bit like flu aches) but were easy to fend off with painkillers.  I hope your treatments aren't too bad - but you will get through them.  Today i feel on a high after the last chemo (maybe steroids). 

Try not to worry about changing on to D/H/P after EC, it is doable and we all experience different side effects, Don't be a martyr to the pain if they give you pain killers take them it makes it easier.

 

I don't know if you ladies have read about nails and chemo or not - i would like to share with you my experience so far - i have just used avocado oil rubbed into my nails and cuticles every other evening and so far after my 7 cycles my nails look and feel fine, hopefully that stays the same.

Also i have used the mouthwash that was given at the hospital only every evening before bed and have not suffered with any mouth issues.  

These are just my experiences and might not work for everyone but just thought i would share.

Stay strong ladies

take care

Debi

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Re: August 2019 Chemo Starters

Hi Spottycotty, Em39 and everyone,

 

Sorry to hear that you have been having a rough time with side effects.  I am on Day 7 post EC and can definitely relate to the “concrete in the veins” feeling, and being in a haze.   I guess that a few of us on the thread are hitting the low point in the treatment cycle now (hopefully we will then get a few better days before the next treatment).  I have also been trying to describe to friends how it feels, and have found it impossible to explain.  I think that I feel like some kind of human chemistry experiment which has been unleashed, but over which I have no control.  Each day is one more towards the end of our treatment, though, and the drugs are hopefully doing their job (as their effects indicate).  Five more to go - yes, we can definitely do it, and we will help each other through.

 

Take care,

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi Debi,

 

Thanks for the message.  I hope that your last treatment has gone well today  - it must feel good to have got to the stage of the final one!   I am just experiencing the start of the low point of my first EC cycle now, I think (Day 7), and am wondering what the side effects of the docetaxel/Herceptin/Pertuzumab will be like in due course.  Today I have felt a bit more tired than previously and more nauseous, although I am keeping going with normal things as much as I can.  It is good that you have your surgery date fixed for early September, which is not far away at all.  I will check out the April 2019 starters thread to catch up on your journey and learn some tips!

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

I'm the same with the extreme privacy....sure my close friends that do know think I'm nuts, but can't stand to be the topic of anyones pity or gossip! Although my logical head knows majority of people are well-meaning.  

 

Great you have your appointment and plan....you'll manage it no bother! I took a paracetamol half hour before cold cap (seen it somewhere) and just try to distract yourself for first 10 mins or so.  

 

Know a lady who just came out other end of treatment with FEC-T and she was only a bit yucky feeling for a few days after treatment each time!

 

xxx

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Re: August 2019 Chemo Starters

Hi Spottycotty, Wolvesgirl, Blackcat and all you other lovely ladies,

Firstly thank you for the lovely responses I’ve had, I’ve never considered an online chat room before now and it’s lovely to know that you are all out there offering kind words, support and encouragement during such a stressful time. I know that everyone’s story and experience will be different but the fact that we all have one thing in common and a desire to support one another is a great comfort.

I’m 3 days on from my first chemo now and compared to some I feel that I’m getting off lightly at the moment, apart from a bit of a rash, feeling generally knackered and at times a bit woozy headed I think I’m okay. Like many of you I’m trying to carry on as normally as possible for my kids and family but the enormity of it all does catch me off guard sometimes. I’m just taking it a day at a time and keep thinking “at the moment I feel ok, so that’s good”. I hope those who’ve been feeling poorly are soon feeling a bit better.

Stay strong ladies

Sending you lots of love and positive thoughts xxx

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Re: August 2019 Chemo Starters

Hi Blackcat

 

I am from the April 19 starters and i noticed your treatment plan is very similar to mine.  I go for my last Docetaxol, Herceptin and Pertuzumab tomorrow.  I will carry on with the targeted drugs Herceptin and Pertuzumab every three weeks for a year.  My surgery is scheduled for the first week in Sept then radiotherapy after 15 session over 3 week.

 

If you or the ladies on this thread need any support or to ask a question please feel free.

 

Take Care

Debi

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Re: August 2019 Chemo Starters

Hi Lisalou 

 

Well I am back from the oncologist who was really nice and very informative.  I have my group prechemo session and 1:1 with the nurses next Wednesday and then start chemo on Thursday - FEC-T - so slightly different to you.  I have got agreement to try the cold cap (hurrah) but will get a wig too just in case.  So, I will be about a week behind you and supporting you all the way to the end.  I then have 23 sessions of radiotherapy and the biphosphonate therapy (which I am pleased about as I went through the menopause really young so I have often wondered if I should have treatment for that). 

 

I don't know how I feel - glad that its finally happening but distraught that it has to.  Anxiety levels rising in some ways but in others I feel more informed and therefore more in control.  Its the strangest time isn't it?  I need to get over the whole extreme privacy thing I think which is causing me a lot of worry.  Anyway, we are off for a long weekend on Friday for our silver wedding so that is something to look forward to and then back to get on with it.  Good luck this week and let us know how you get on. xx

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Re: August 2019 Chemo Starters

Ahh Em39,

 

Sounds like you had it worse than me and I thought I was bad enough!! You poor thing!

I can honestly relate to everything you’ve posted there. I had the IV anti sickness and saline drip which made me feel loads better but I have spent the last week in a befuddled haze.

I’ve managed to walk the dog and I even did a roast dinner yesterday but I haven’t been quite ‘with it’ if you know what I mean.

As I laid in the bed in hospital I did wonder if I can manage another 5 treatments but I’m doing this for the children too, so of course we can do it 💪

Today I have woken to the feeling of concrete in my veins, this must be the fatigue we’ve been told about, I’ve trued to explain the feeling to hubby but words can’t quite capture the reality!!

Anyway, 5 more, we can do it, we’ll do it together!!

 

Really hope everyone else is ok, hopefully you’re breezing through it.

Lisaloo, you’ve got this, please don’t eat freaked out, some people really do breeze through xx

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Re: August 2019 Chemo Starters


@EM39 wrote:

Hi Ladies,

really really appreciate the advice, it helps so much to be informed so we can stay well and recover quickly...any bit of control when we feel so helpless!

 

i had my first FEC on Thursday with cold cap and anti-sickness Infusion before. I also found cold cap to be fine after 10 mins or so. Felt great for a few hrs and then sickness hit me like ton of bricks. Was extremely sick for few hrs...gradually getting worse, bad headache and sore neck, left this for about 6ish hrs and finally phoned 24hr helpline and they said I needed seen and to go to A&E. They were great and very thorough (had ct scan and antibiotics) as blood levels had done something to indicate either infection or could be caused by severe sickness...thank god was just sickness!  Got IV anti-sickness and kept in 2ngts, have felt a million times better now I’m not sick just low on energy and bit headachey/woozy! Glad I didn’t leave it any longer to get seen as if it was something else rather than side effects then it could be much worse! So hard when we have been so well and full of energy previously, but we are being given such toxic combinations it’s bound to have a big impact on our bodies.

 

hoping next 5 rounds aren’t so bad and dreading my hair loss...but just thinking of this a 5 horrendous hangovers I need to get through over next 4 months!!! I’ve got 2 young kids and I’m doing this for them. 

 

Stay well xxx


Hang on in there I lost some hair with cold cap mainly at the sides but it was easily camouflaged ! Only wash once a week and buy wide-toothed comb 

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Re: August 2019 Chemo Starters

Sorry if this is a silly question.  Is it ok to have vitamin drinks? I’ve got the large dissolvable tablets you add to water? Thanks xxx

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Re: August 2019 Chemo Starters

Hi Ladies,

really really appreciate the advice, it helps so much to be informed so we can stay well and recover quickly...any bit of control when we feel so helpless!

 

i had my first FEC on Thursday with cold cap and anti-sickness Infusion before. I also found cold cap to be fine after 10 mins or so. Felt great for a few hrs and then sickness hit me like ton of bricks. Was extremely sick for few hrs...gradually getting worse, bad headache and sore neck, left this for about 6ish hrs and finally phoned 24hr helpline and they said I needed seen and to go to A&E. They were great and very thorough (had ct scan and antibiotics) as blood levels had done something to indicate either infection or could be caused by severe sickness...thank god was just sickness!  Got IV anti-sickness and kept in 2ngts, have felt a million times better now I’m not sick just low on energy and bit headachey/woozy! Glad I didn’t leave it any longer to get seen as if it was something else rather than side effects then it could be much worse! So hard when we have been so well and full of energy previously, but we are being given such toxic combinations it’s bound to have a big impact on our bodies.

 

hoping next 5 rounds aren’t so bad and dreading my hair loss...but just thinking of this a 5 horrendous hangovers I need to get through over next 4 months!!! I’ve got 2 young kids and I’m doing this for them. 

 

Stay well xxx

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Re: August 2019 Chemo Starters

 

Hi everyone.

 

Just checking in trying to catch up on how everyone’s doing. Hope your all doing ok?? Iv got my pre chemo chat, bloods and look around the ward tomorrow 😳 starting to get very anxious about Friday now. Thanks for all the tips and words of wisdom from those that have already gone through it have just started there chemo journey. 

 

Big hugs to everyone xxx

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Re: August 2019 Chemo Starters

Blackcat ❤️❤️Check your tongue for oral thrush, don’t forget it’s fluconzole tablets you want not the drops 💪💪 it’s easy to think oh i’ll See how that is in a bit, but during chemo please get straight into your rapid response teams, always best to check about everything 👭👭they’d rather you do so they can keep you safe ❤️❤️If anyone has burning pee but no temp, straight onto rapid response number, it’ll need antibiotics ASAP during chemo. 💕💕Shi xx

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Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Thanks for your message.  Thankfully my throat issue has improved today - it’s much less dry and scratchy, and I had no temperature rises overnight.  I had bought some Corsodyl mouth wash in anticipation of possible mouth problems, and this seems to be helping (also eating pineapple ice lollies, as someone had recommended on another thread).  It’s just so tricky to know whether a new symptom is a chemo side effect, or the start of an infection about which we should worry   The on-call chemo nurse I spoke to yesterday said that it is always best to ring in for advice even for minor symptoms, because many of them are normal and we can be given reassurance about them (or be asked to go in for assessment if need be).  So although I felt a bit of a hypochondriac ringing in, I guess it was the right thing to do.

 

i hope that you are having a good day, and that your oncology appointment goes well tomorrow.

Bkackcat  xx

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Re: August 2019 Chemo Starters

Hi Blackcap and Spottycotty

Sorry you have both had issues to deal with - Blackcat, how is your throat now? Its going to be hard to think about all these things when normally we would just ignore them!  Enjoy Sunday, and we go forward into a new week together.  I will let you know the outcome of the oncology appt tomorrow. x

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Re: August 2019 Chemo Starters

Hi Bob123

Welcome to the group - like you, I started off this journey with an expectation of removal of DCIS and then radiotherapy.  They also found, to their surprise that in the middle of the DCIS was an area of grade 3 invasive ductal carcinoma so my journey has been extended.  I did not require such extensive surgery as you though.  I see the oncologist tomorrow to discuss chemo - my cancer is triple negative so no herceptin or hormones for me.   Hope you settle onto your regime and that you can share your journey with the rest of the August 2019 girls x

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Re: August 2019 Chemo Starters

Hi Bob123,

 

Good to meet you, although I’m sorry you find yourself on this forum where none of us would have chosen to be.  I started chemo last Wednesday and also am HER2+, but unlike you am having neo-adjuvant chemo before surgery.  My regime is two three-weekly cycles of EC, then four of docetaxol, Herceptin and Perjeta, 

 

So far I have generally been OK in terms of side effects - I have had almost no digestive or nausea issues, and in fact have been hungrier than normal (probably due to the steroids, which I will finish tonight).  I have had some tastebud changes, but am now getting used to never knowing what something I usually enjoy will taste like.  I haven’t felt too tired and have mostly been able to carry on doing normal things, although today I did have to ring the chemo helpline as I developed a scratchy sore throat, which apparently can be a mouth-related side effect (as long as your temperature does not rise).  I am finding it a bit stressful having to check every little bodily symptom and wonder what it means, but I suppose that’s what we need to do in order to keep ourselves safe when our systems are being zapped by such powerful drugs.

 

It will be good to share the journey with you, as I’m sure that comparing experiences and tips on this thread will help get us all through.  It’s great to know that we are not alone.   I hope that you will have a good day tomorrow.

 

Blackcat xx

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Re: August 2019 Chemo Starters

Hi Spottycotty,

 

I’m sorry to hear that you had to go in again for an ECG, particularly after your horrible experience with the nausea earlier in the week.  It’s great that you are now feeling much better and are able to look forwards, which is the most important thing.

 

You are right - it is hard to adjust to this new precarious, chemo-driven existence with so many unpredictable effects on our bodies.  I have been feeling well over the past couple of days with no issues other than strange tastebud changes, but today developed a bit of sore, scratchy throat and though I had better ring the chemo helpline.  My temperature was normal, but our chemo information leaflet stated that you could have an infection without a high temperature (it listed colds, sore throats, UTIs as examples), and to ring in to check.  The chemo nurse said that a dry/sore throat can be one of the mouth-related side effects of EC chemo, and advised to continue with the mouth care I am already doing (Biotene, soft toothbrush, salt water washes, mouthwash).  She told me not to self-medicate (e.g. with a throat lozenge), and to do an hourly temperature check in case of rises which could signal an infection rather than a side effect.  Thankfully I have not had any, but it does show how we now have to worry about every minor symptom, which previously would be of no concern.  I guess we will get used to it as time goes on!

 

I hope that you will have a good day tomorrow, and that things will continue to improve.

 

Blackcat x

 

 

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Re: August 2019 Chemo Starters

Hi Bob 123,

 

Welcome to the group, we are all either at early stages of chemo or starting in the near future. 

Sad that we’re all here but we’ll help each other along won’t we!

I had my first chemo last Tuesday, I won’t lie, it’s been a rough week for me, suffered with extreme nausea, had to go in again yesterday for ECG as was getting heart palpitations but all good now.

Finished my meds apart from the injections and I can feel the haze lifting!!!

Hard to come to terms with at first feeling like that, I was so fit and healthy last week 🤣

Anyway, hope everyone else is doing ok, how are you feeling in yourself Bob123??

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Re: August 2019 Chemo Starters

Hi All

I’m brand new to the forum and looking for others who have just started chemo. I was diagnosed with high grade, extensive DCIS and had a total mastectomy and tram flap reconstruction in May my DCIS had become invasive and was Her2 + so I started chemo yesterday; 12 weekly sessions of  paclitaxel and 3 weekly herceptin. Apart from a sleepless night last night I’m feeling ok today.

I’d love to hear from anyone out there who’s in a similar situation or who wants to share the journey with me.

Hope to hear from you soon

Bob 123 xxx

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Re: August 2019 Chemo Starters

Hi Lisa

 

Poor you - you don't need this anxiety on top of everything else but it sounds like you have a good manager who will support you.  Hope Macmillan are able to help you too. xx

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Re: August 2019 Chemo Starters

Hi Sue

 

Thanks for your inspiring post - it has really helped as the view from a year down the line is useful in reminding us that life will get better once we have navigated this tricky little section of the road.  I am so pleased to hear that you are feeling so well and have got back to work and also enjoying your free time.  I retired last year and to be honest have loved every minute until this started and with all the waiting for appointments, decisions, outcomes etc I found myself wishing I was back there just to take my mind off everything.  I am doing a distance learning masters so once term starts again I should be fine (chemo brain allowing).  Keep well and thanks again x